Perception of Palliative Care Encounter

Objectives:

Primary Objective The primary objective is to determine patients' perceptions of the timeliness of their referral to an outpatient palliative care clinic.

The secondary objectives are to determine:

1. The factors and variables associated with perception of timeliness such as age, gender, and symptom distress 2. The patients' perceptions of the physical environment of the outpatient clinic at UT MD Anderson Cancer Center (UTMDACC) such as lighting, music, and lack of a waiting room; and 3. If there is an association between level of distress (physical, psychological, and spiritual distress as measured by Edmonton Symptom Assessment Scale (ESAS) and the usefulness of the referral to palliative care center.

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Key information

Conditions

Advanced Cancers

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

University of Texas MD Anderson Cancer Center

Houston, Texas, 77030, United States

About this study

If participant agrees to take part, they will complete 1 questionnaire over the phone, in person, or via e-mail about their first consultation experience, within 1 month after their visit. It should take about 15 minutes to complete. Health information about participant (such as their name, medical record number, telephone number, e-mail address, IP address, age, gender, race/ethnicity and cancer type) will also be collected but will not be shared with anyone outside of MD Anderson, except when required for regulatory purposes, or when required to be shared with study sponsors or study monitors. Participant's survey answers will not be shared with the Supportive Care staff.

Distress Plan:

Telephone - If participant experiences any distress while answering the survey questions, the research assistant will immediately contact our nurse in the Supportive Care Center. Participant will be contacted immediately to provide telephone counseling or address any other issue that may be causing distress. Our phone care nurse will offer participant to schedule a face-to-face visit with one of the Supportive Care physicians or to see a nurse in the Supportive Care Center.

In-person - If participant experiences significant and high levels of distress while participating in the study, we will refer participant to their primary care physician, physician in the Supportive Care Center or one of the supportive care counselors.

Online - If participant experiences significant and high levels of distress while completing the online survey, they may stop the survey and call the Supportive Care Center (during office hours) or the Supportive Care Mobile Team (after office hours or weekends). The contact information will be displayed on each page of the online survey.

Patient's participation on the study will be over after they have completed the questionnaire. Participant's de-identified study information will be kept by the Principal Investigator in a locked file cabinet and password protected electronic study database for 5 years after publication of the research and then destroyed. Online survey responses, demographics, e-mail address, and IP address will be stored indefinitely in a secured database by the Qualtrics team.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Have advanced cancer, defined as locally advanced, metastatic or incurable disease
>/=18 years of age
Seen at UTMDACC outpatient Supportive Care Center for consultation
Provided informed consent

Exclusion criteria

Memorial Delirium Assessment Scale (MDAS) >/= 13.
Inability to read and speak English

Treatment and study plan

survey

Behavioral

Participants complete palliative care survey within 1 week +/- 4 days of initial consultation via phone survey conducted by Research nurse/assistant.

Other names: Questionnaire

Primary outcomes

Participants' Perceptions of Timeliness of Referral to an Outpatient Palliative Care Clinic

Time frame: 1 day

Percentage of respondents who report that their referral to supportive care was late (including "late" and "too late") estimated with a standard error not larger than 0.04.

Sponsors and collaborators

Lead sponsor

M.D. Anderson Cancer Center

Other

Registry information

Official study title

Perception of the Palliative Care Encounter by Patients Who Are Referred to Outpatient Supportive/ Palliative Care

Important dates

Study start: 2015
Primary completion: 2021
Study completion: 2021
First posted: Sep 23, 2015
Registry last updated: Apr 14, 2021

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed